Tag Archives: disability

I Want To Scream

Posted on October 14, 2020 by Jennie Spotila

I feel like screaming a lot these days. I’ve been following distancing/isolation guidelines for 217 days and counting, and it’s hard. Reading the news usually leads to doomscrolling on social media. Honestly, there are so many distressing and maddening things … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , | 37 Comments

How Pandemic Response Measures Harm People With Disabilities

Posted on September 7, 2020 by Jennie Spotila

The coronavirus pandemic is reshaping all our lives. With more than six million confirmed infections in the United States, we are living through a seismic cultural event impacting how we work, learn, socialize, and function. For people with disabilities, like … Continue reading →

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A New Year (With Cake)

Posted on January 2, 2020 by Jennie Spotila

In the last weeks of 2019, social media was full of people talking about their accomplishments of the last decade, or what they were most proud of, or the biggest changes they made. These posts made me feel terrible. What … Continue reading →

Posted in Occupying | Tagged , , , , , , | 17 Comments

#MillionsMissing 2019

Posted on May 11, 2019 by Jennie Spotila

We are the disappeared The vanished The millions missing Blink Snap your fingers Gone Do you miss us? Does anyone ask what happened to us? Does it cross your mind that we are still very much alive? We think of … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , | 16 Comments

The Best Holiday Ever

Posted on November 23, 2018 by Jennie Spotila

Getting a puppy was not in the plan. My husband and I already had a dog (Fargo) and a cat (Lucas). The plan was for my parents to pick out a dog, and I just went along to help since … Continue reading →

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After The Afflicted Freak Show

Posted on August 21, 2018 by Jennie Spotila

Many people in the chronic disease community were anticipating Afflicted, the Netflix series about seven people with poorly understood illnesses. In light of Jamison Hill‘s appearance in the show, the ME community hoped to build on the success of Unrest … Continue reading →

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Better Late Than Not At All

Posted on November 23, 2017 by Jennie Spotila

Last night, I was really struggling to come up with anything to be grateful for. I can’t say that no one in our family died this year. I can’t say my husband is getting closer to returning to work. I … Continue reading →

Posted in Occupying, Uncategorized | Tagged , , , , , , , , , , , , , , | 16 Comments

Book Review: Growing Gills

Posted on May 15, 2017 by Jennie Spotila

I usually focus my book reviews on titles that are directly related to ME, but I’m making an exception today because I want to tell you about Growing Gills by Jessica Abel. This book is about creativity, not disease, but … Continue reading →

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#MillionsMissing 2017

Posted on May 12, 2017 by Jennie Spotila
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Preconditions, Burdens and Ableism

Posted on May 10, 2017 by Jennie Spotila

Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , | 18 Comments